weblog of a painter, sculptor & triple cancer survivor

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So many horrendous things going on in the world and so many celebrity deaths this year; some of the stars lived to a ripe old age so their deaths didn’t shock or surprise us, but I’m still reeling from the others. We didn’t know these people personally but nevertheless they played a big part in our lives and we miss them.

It’s been a very bad year for friends of mine too, with my first funeral of the year being on 18th January and the last on the 13th December, with three more in-between and several friends whose funerals I wasn’t able to attend.

Just when we thought there could be no more celebrities leaving us we hear of Liz Smith – and from the world of music two more tragic deaths, Rick Parfitt and George Michael, the latter being so young.

Although I am a Humanist I can appreciate that all religions have been the influence behind some great music, architecture and art and I am a great lover of Christian icons and the fact they are created from odd bits of wood, metal etc. I created my own tributes to two departed great pop icons.

Purple Rain

I found off-cuts of wood and used oil paint for the figures, but decorated them using old CDs, recycled pie cases, a reused wine gift carrier, tissue paper, jewellery findings, Foster’s Lager can, left over kids sticky-backed diamante and trimmings. There is always another use for everything! Since then I have done copies of the originals (so entirely collage) and used similar recycled materials for decoration (re-cycled cooking tray and wrapping paper)

This is how Starman began, first the painting (using many photos from many years as reference, as I didn’t want to just copy the original photographers’ work)

Starman 2 (because this is a print from the original figure I was able to cut out the hand and move it to a different position)

Purple Rain 2 (in some ways this is better than the original, but the wine carrier of the original jacket was much easier to work with than the flimsy wrapping paper above).

Less than three weeks after my discharge from Queens Park Hospital I started chemotherapy at Christies; I had two different drugs, 5FU and Mitomycin on the first occasion and five more treatments at three-weekly intervals, 5FU every time and Mitomycin alternate times.

I had a light lunch of cauliflower cheese (anticipating nausea I thought the less I ate the fewer times I would be sick). My anaemia was then at an acceptable level and the treatment began, scheduled to last approximately 24 hours. Paul was with me when the sickness started, suddenly and violently; so violently that I wet myself every time I retched. (It was more than 20 years before I could face cauliflower cheese again!). Next day Paul returned to collect me and drove me back to his place with a sick-bowl on my lap and spares in the car!

The next treatment three weeks later was much worse. After the radiotherapy I went into instant menopause and I thought this might be a contributory factor as to why I was feeling so unwell mentally. I felt my flesh was sucking in and yet my body felt like it was exploding outwards. I felt like a hostage and wanted to tear the cannula from my arm and make a run for it.

At this point in my life as a patient I had started to notice the decline in the care I was getting at Christies. More and more pressure had been heaped on the nurses and they no longer had any time to sit and reassure me as they had done previously. Instead of all the familiar faces there seemed to be more and more bank or agency staff and as a result there was no continuity of care. (I truly hope this had improved over the years).

The toxic chemicals gave me a runny tummy, which really burned my stoma and caused me a lot of pain, so felt I needed to irrigate to try and empty myself as quickly as possible. Trying to irrigate in a hospital toilet whilst hooked up to a drip that was feeding chemicals into my hand or arm was a bit of a nightmare to say the least. Apart from vomiting my insides up during and immediately after the infusion, a few days later I would start with ulcers in my mouth and then through my entire digestive tract (mucositis). I could hardly eat anything as it hurt too much and I was in a mess. After that second infusion I told Paul I couldn’t go back for any more, I was finished. He would hear none of such nonsense and plied me with Build Up drinks and stuffed me with bean sprouts and brown rice (he had heard the latter had healing properties and I have no idea if that is true, but it didn’t exacerbate the soreness in my mouth and gut. Much later I was to discover that a hearty meal of brown rice before the chemo was better than eating very little. It seemed to line my tummy and lessen the effect of the toxins).

After my second brush with cancer my Australian cousins had given me an anti-cancer, anti-heart attack cookbook containing the Pritikin and Gerson diets, predominantly vegetarian or vegan and a bit too radical for me to follow. However, having read that book and many more, I concluded that red meat was more carcinogenic than white, so after my AP resection I had stopped eating red meat to try and aid my chances of survival.

Latterly I had been given a book written by Penny Brohn who had co-founded the Bristol Cancer Help Centre and she advocated the holistic approach. It all made sense to me and although I couldn’t manage a vegan diet, I did start a regression diet and loosely follow a maintenance diet to this day. I also take supplementary vitamins and minerals as advised by Penny Brohn and visualisation was something else she also recommended. That leads me to question whether writers/journalists should write about their cancer when they are currently trying to combat it. How can you visualise the tumours leaving your ravaged body when your daily life is focused on a book, an article, blog or radio programme? Think John Diamond, Helen Rollason, Nick Clarke to name but a few, (more recently Linda Bellingham and Kate Gross). Although I might have been tempted to document my experience at the time, I had my dissertation to concentrate on and that didn’t give me time to dwell on my cancer. (During my earlier encounter with cancer my time was spent concentration on my sons and working to pay off my debt).

Probably the most important part in trying complementary therapy was the belief I was actually doing something to help myself.

During the chemo I also had problems with my vision, memory and concentration – and mentioned these issues to the doctors who said they hadn’t heard of those side effects. As I usually arrived at the hospital very early and without exception only started my infusion very late, I decided to make use of the time (when I was still feeling human) by conducting my own unscientific survey with the women on the ward – and was interested to find that the majority said they experienced the same difficulties as me. I reported my findings to the doctors and thought no more about it, but now, some 25 years later, I find all three listed as possible side effects of chemo – and even given a title – ‘chemo-brain’!

The results of the blood tests prior to my 4th treatment showed my red blood count very low and so I needed to be transfused. With the last experience in the Blackburn hospital fresh in my mind I went into panic mode, even more so when the staff said they had no record of that in my notes, though the consultant had promised to notify Christies. Fortunately the staff trusted me and phoned Blackburn for the details. They assured me I would be fine, as they would give me an injection of steroids and also antibiotics in anticipation of any adverse reaction. The blood transfusion went according to plan, followed by the chemo and I was comparatively well throughout both.

Even though Dr James had initially been very reassuring about the possible hair loss, the inevitable started to happen. In retrospect I should have cut my hair short while it was still thick and silky, but I was clinging to the hope I might not lose it – or perhaps experience only slight hair loss. Gradually I noticed a change in the texture – it became dry and brittle and I had a terribly itchy scalp, but still I clung on, refusing to accept what the consequences might be, but then it happened. First whilst I was combing my hair and then great clumps would appear on my pillow each morning till eventually it all fell out. The loss of my eyebrows I could cope with as they could be penciled in, but the loss of eyelashes was quite a different matter. My lovely long thick black lashes – gone forever. Even though they grew again they have remained very sparse, perhaps also due to the aging process and not least that instant menopause. My nails suffered too. They have always been corrugated from root to tip, but during the chemo they grew corrugated from side to side – very weird!

One thing I hadn’t considered about being bald was how cold I would feel! Fortunately I love wearing hats and my mum made me a selection of knitted berets that were warm and snug. The wigs I was issued with were a real treat and my Art History tutor gave me a lovely large scarf to tie in a turban. The steroid injection caused me to plump up and with a nice head of hair, albeit artificial, I started to look remarkably well!

Hair as course as straw before I started to lose it, but plumped up face from the steroids

The beginning of the end..

A beneficiary of my hair loss was Wilf, a porter who had regularly wheeled me to and from the radiotherapy department. He wore a rather thin bedraggled pigtail and one of his fellow porters, a young strapping lad, had a nice thick plait almost down to his waist. This dismayed Wilf, so when my hair finally fell out I plaited half of it, sealed it at the top and added tape so that he could attach it to his own, thus giving him a plait to be proud of!

Around this time I had to submit my dissertation to the college and hang my degree show.

A month after my chemo finished I had another CT scan and a check-up with Dr James, where he asked me to bring Paul into his office, which I knew to be the procedure when a doctor may think a patient might need some support when being given bad results. He looked me straight in the eye and said the scan results were good, but there were no guarantees; ‘however, I know you – and what you are capable of. We have done everything we can, so it’s up to you now!’ I knew what was implied, but he stopped short of telling me to go home and put my affairs in order, he was throwing down the gauntlet – and I accepted the challenge.

Out of hospital again and to Paul’s to convalesce. It was natural that there should be some blood loss after the surgery, but by the Sunday it was running from me and at 10pm I became rather worried and phoned good old Dot, in her capacity as a nurse. Her first question was, ‘Is it dark or fresh?’ ‘Bright red’, I said. Very calmly she told me to get to A & E without delay.

Paul raced me up to Blackburn Royal Infirmary where they examined me and then sent me by ambulance to Queens Park Hospital, which dealt with gyneacological problems. Paul followed in the car and it was he who told me later that the crew was using the blue light. I had gravely underestimated the seriousness of the situation.

Queens Park Hospital filled me with foreboding as it had once been the workhouse and it hadn’t lost any of the characteristics. It was dark and dingy and the brown curtains around my bed were hanging with far fewer hooks than were meant to be, leaving me exposed to anyone who passed by. The nurses were super so no complaints there and they called a doctor. Having lived 17 years in Africa I was pleased to see the flashing smile of the young Nigerian who came to examine me – until he told me it was his first day! At that point I got a little panicky and not least when he produced the cold metal of a speculum and proceeded in his attempts to examine me – even though only a few days earlier I had undergone surgery and been stitched up rather tightly (too tightly it would seem)!

It was not a happy scenario and even now I wince at the thought. He tried several times to insert the speculum, completely oblivious to my screams of anguish. By now it was well into the night and the doctor eventually abandoned his attempt and called another young doctor who went through the ritual all over again! The pain was indescribable and I heaved a sigh of relief when they decided to wait till the morning when the consultant would be there. It was all so horrendous that I didn’t care if I bled to death – and it gave me a hint of how barbaric FGM is. Paul was with me the whole time, holding my hand, frightened to leave me there, as the episode filled neither of us with confidence, but at least he knew I wasn’t imaging it.

The next morning brought nothing to put me at ease as the phlebotomists swooped into the ward like vampires to collect their bloods, syringes in hands or stuck in their pockets! My previous experience had been of calm young ladies walking into a ward with a trolley in which they kept their paraphernalia and then labelled and deposited the phials of blood in allocated slots, never once using their pockets!

The ward sister didn’t fit with my overall impression of the hospital, as she was immaculate in starched hat, apron and white-cuffed sleeves. From out of her breast pocket poked a selection of pens, gadgets and keys on chains – and she wore a fancy fob watch that she checked regularly and she looked quite incongruous on the dingy ward.

The newer part of the hospital was joined to my ward in the ‘workhouse’ side and the floor didn’t have a clean connection. There was a ridge where the two floors joined, which meant that everything wheeled over it would make a loud clumping and screeching sound – and patients on trolleys received a violent bump as each of the four wheels traversed it.

Worst of all I discovered that women who had lost their babies were on my ward within earshot of the nursery or other babies with their mums. It was so hard on them – so very cruel.

The consultant gyneacologist duly came to see me and upon hearing of my surgery just a few days earlier, she didn’t even attempt an examination, she just prodded my abdomen and checked on the bleeding. The results of blood tests showed I was anaemic and bearing in mind I was to start chemo in three weeks, she decided to transfuse me with three units of blood. During the second unit I had a pyrexial reaction, my temperature soared and I started to feel sick. In the absence of any nurse, Paul, who just happened to be visiting, dashed to the sluice and brought me a bedpan. He arrived back at my bed in the nick of time as I started to vomit. By this time a young nurse had appeared and she just walked past my bed, screwing her face up and exclaiming her disgust (Paul and I thought perhaps she wasn’t in the right profession!). My temperature rose, the curtains were pulled around me and the nurses started stripping me off and bathing me with tepid water. A fan was directed towards me, the transfusion was terminated and I was started on the antibiotics, Cefotaxime and Flagyl.

Ugh! (papercut)

Next morning the consultant said I’d obviously had a reaction to the blood, but they would need to give me more due to the anaemia. They decided to try again with the transfusions, but first spinning out the plasma. A different Nigerian doctor was on duty and asked the sister to bring the cannula. She returned with whatever size is normal for transfusions and the doctor said that was no good as the blood was so concentrated he would need a grey needle. ‘NOT A GREY NEEDLE!’ she exclaimed, ‘I hate using a grey needle’, she said, turning to me. I could feel the colour draining from my face as she went off to find the dreaded needle. The doctor duly inserted it in the back of my hand and then bandaged around it. From the start it was quite painful and I thought this must be why the sister didn’t like using that particular implement.

It was late at night when they moved on to the second unit of blood and I complained to the nurse about the pain in my hand, but she just thought I was being a wimp! As the night wore on the pain increased till I was in agony and I began to developed rigors, even my teeth were chattering. When the nurse checked my vital signs everyone jumped into action and brought in an ECG machine. By then I was shivering uncontrollably, had developed a rash and was freezing cold. They covered me with an emergency foil blanket (second time in my life) and warmed saline bottles in the microwave to use as hot water bottles and shoved them in the bed beside me. Still to no avail and then one of the nurses climbed in bed with me and as I began to feel warmer I was able to whisper, ‘my hand, the pain is killing me.’ She instructed another nurse to remove the bandage and then they discovered how swollen and discoloured my hand was. The doctor had inserted the cannula incorrectly and it was immediately removed, much to my relief.

Next morning the sister came to see how I was, ‘I believe you had a few problems in the night?’

‘Yeah, I didn’t think I was going to make it’

‘Neither did my staff!’ She walked off.

Hospital Horrors (papercut)

The consultant came to see me – she decided against any more transfusions as the haematology department couldn’t discover what was wrong. She wrote to my GP (with a cc to Christies) to explain the events, but no mention of the curious incident of the hand in the nighttime, but I suppose that was considered irrelevant.

On the 14th November I received an appointment from St Mary’s for 17th December. Meanwhile the pain was getting worse even when lying in bed – excruciating when turning over and equally painful when trying to lie on my back. I seldom went into college, doing most of my work at home with Paul taking me in for tutorials (I had been told I could defer my exams for a year, but under the circumstances I wanted to plod on as I may not be around the following year). On one occasion, 23rd November, I was in such agony that the tutors wanted to take me to the hospital, but I declined as I had an appointment with my GP that evening. Paul almost had to carry me into the surgery and I begged my doctor to try and get my appointment at St Mary’s brought forward, but he couldn’t as Professor Tindall was away (I didn’t know why someone else couldn’t see me as I had only seen him at my very first appointment). My GP prescribed some strong painkillers.

Things went from bad to worse and on the 5th December I discovered a lump inside my vagina and also experienced problems passing urine. I got an appointment to see my GP the following day and he thought the lump was just a cyst and told me to wait to see the prof when he returned, but on the 10th the cyst burst and discharged a brownish pink pus, which was very similar to the ‘pocketful of pus’ that erupted during my bladder repair. The discharge continued all night and the following day. I collected some in a specimen jar to take to St Mary’s, although I know they wouldn’t be able to analyse it as it would be too old by then, but if I had no evidence then again it might be suggested that I was imagining it!

I attended the appointment with the professor, only for him to give me the news I had carcinoma in situ of the cervix. ‘I know all that’, I told him, ‘I told you and your staff I was being monitored for it at Ormskirk Hospital where they tried to do a cone biopsy last year, but nobody is listening to me, I can hardly walk, I cant lift my left leg, your staff have had to do it for me!’ With that he helped me onto the couch, examined me and immediately went to phone Christies. That was Monday, the week before Christmas 1990 – and there had been a scan cancellation on the Friday and he asked me if I would be able to attend.

He came to watch the scan taking place and also present was my previous consultant in radiotherapy, Dr James. I saw them both through the glass window as I entered the room and thought that was rather an unusual occurrence as in my previous experience the results would be delivered to them at a later time. Scan completed they both came into the room with grave faces and said the original tumour had thrown down deposits; the disease had metastasised. The tumour had started to damage my pelvis and I had a hairline fracture, which explained the pain and why I could hardly walk! (I have recently obtained my hospital notes and discovered the scan results read, ‘Appearances are those of recurrent necrotic anal carcinoma involving the pelvic floor, base of the bladder, and both pelvic side walls, with extension through the left pubis and superior pubic ramus into obturator externus’).

It was December 21st and they wanted me to return to Christies on the Monday, Christmas Eve, to start radiotherapy with a break for the holidays. I said ‘no’, for months I had been telling their staff that there was something wrong with my pelvis and they had been ignoring my symptoms and pleas for help – and now my elder son who was working in Hong Kong, was arriving home on the Sunday and would only be in the UK for just four days over Christmas and I wasn’t going to give up that precious time with him, so after we had taken him to Manchester airport on Thursday, I would come straight to the hospital. Realising the importance of this, both consultants were in agreement and so on 27th December I started radiotherapy. It would only be for a few minutes each day, but I remained in hospital during the week, returning home at weekends when the radiology department was closed.

I had to be measured up for the x-ray therapy (as it was called), which included having three small tattoos forming part of an X. One dot at each of the bottom legs of the X (on each of my upper thighs) and one at the centre point – the bulls-eye – right in the centre of the pubic bone! (As the tattoos are permanent they are always a reminder and I am very conscious of the two on my legs whenever I am wearing a swimming costume).

All this was taking place during my final year at Liverpool, which meant that my artwork was becoming sadly neglected, so I took in all the notes I had gathered for my dissertation and I tried to make sense of them on the ward and rewrite them with some sort of structure. Not an easy task with all the activity going on around me. The amazing nurses took pity on me and allowed me to use the Interview Room whenever it wasn’t in use, something for which I shall be eternally grateful.

Paul came in as often as he could, but he was working two days a week, so it wasn’t every day. He often brought delicious and nutritious food for me and he would sneakily have my hospital food, which was quite good, but I couldn’t face a cooked meal with pudding and he seemed to enjoy the meals – and would otherwise not get a cooked meal if he were with me most of the day. We would sometimes exhaust our conversation, so Paul would then take a walk around the hospital and invariably return with a broadsheet, which he would spread over my bed and read from cover to cover. I would sometimes have a read too – get on with my dissertation or do a bit of drawing in my sketchbook. Him just being there was such a great comfort and it didn’t seem to matter if we spoke or not.

As the days wore on I started to feel the effects of the radiation, not least realizing my internal organs were being damaged, especially those behind the bulls-eye. I would have to regularly break off from my dissertation or leave Paul to go and sit on the bidet, which I would fill with cool water to try and ease the burning sensation, my urethra taking the brunt of the harm, but also severe burning to everything in the close vicinity.

Over the weeks I got to know many of the other in-patients. There was one little old lady in the bed right at the far side of the ward from me, so I didn’t know her very well. One day I was lying on my bed waiting for the bathroom to be free and she walked past, having just returned from her few minutes of radiotherapy, so I greeted her and she came over to talk to me. We compared notes and she showed me the little finger of her left hand where she had a squamous cell carcinoma on the top segment. She told me a bit about herself, she was 80, what a wonderful life she had, lots of children and grandchildren and her husband was still alive and in fact there he was at her bed, waiting for her, with four of their daughters. She went on to say that if the radiation didn’t work she would have to have her fingertip amputated and she didn’t know how she was going to cope with that. I asked if she was left-handed and she said no! I quietly sympathized with her and told her she would soon adjust if amputation was necessary, but really wanted to say, ‘look around you; many of the women on this ward will die – very soon. Just opposite me is Sharron, a student at Manchester University and she has a three-year-old boy – and you are complaining that you might lose the tip of your little finger!’ Aargh! (Not very compassionate of me, but in a cancer hospital it’s usually not difficult to see people very much worse off then oneself).

Some months later I was to learn that Sharron had died, she had just turned 24.

During the course of my treatment I found a lump under my left arm and so Dr James sent me for a mammogram at Withington Hospital, explaining that I (again from my recently acquired notes) ‘had a previous history of cancer of the cervix and was currently having X-ray therapy to left pubic ramus for a long metastasis from a squamous cell carcinoma and wondered if the axillary lump represented a third primary tumour or mets from the SCC’.

Towards the end of my treatment Dr James told me that he wanted me to take a month off and then start a course of chemo. I was horrified at the news as I associated it with vomiting, which is something I have always found really hard to cope with. And what about my hair? Having had long hair for most of my life, the thought of losing it was almost unbearable, but Dr James said with the drugs I would be on there was a chance that I would be okay as hair loss usually only occurred in about 10% of people – or did he say there was usually only about 10% of hair loss? That was one of those occasions I didn’t take everything in. I groaned but agreed with his plans for me, as I trusted him implicitly.

Before that however, the lump under my left arm needed investigating, so when I was discharged on the 18th January I had to return again two days later for the lump to be removed the following day. At the same time the professor attempted to do a cone biopsy (as the previous one at my local hospital failed, due to displacement of the uterus. A cone biopsy can be used as a test to diagnose cervical cancer or as a treatment to remove pre-cancerous cells). In doing so he also spotted suspicious tissue in the vagina and so removed it, stitched me up and had the tissue analysed. That confirmed ‘partially necrotic squamous cell carcinoma’. Again, the cone biopsy wasn’t possible. On the plus side, the histology report on the lymph node under my arm showed mild histiocytosis, but no evidence of neoplasia – and the results of the mammogram came in and they were ‘satisfactory’.

The young surgeon who performed the operation came to see me and said she got more than she bargained for, as when she made the incision just below the bladder, a pocketful of pus erupted and that I must feel pounds lighter! She also said there wasn’t much wrong with my bladder, so they cleaned me up and made a couple of stitches. I asked what caused the pus and she replied ‘just one of those things,’ which to me didn’t seem a very satisfactory answer, but what would I know? A drain tube had been inserted until the pus found its own way and I was given intravenous antibiotics, followed by oral ones and I was discharged a week later. The cyst still hadn’t been removed for fear of causing infection. The discharge from the drain hole continued and my GP prescribed more antibiotics.

Some weeks later I started to get a terrible pain in the lower part of my pelvis when I moved my left leg. I thought I had pulled a muscle or ligament or something and was expecting it to ease off. I attended St Mary for a check-up and another smear on 3rd September and by this time I couldn’t lift my left leg and the doctor had to help me onto the couch, clearly not questioning my immobility. The result of the smear wasn’t good, showing a change in the cells and they sent me a further appointment for 1st October. There I was told that I would need a colposcopy and they would send me yet another appointment for 9th October.

The pain in my left leg and pelvis got worse and I developed lower back pain also, so went to see my GP. He thought the pain in my leg and pelvis was probably caused by whatever was causing the pain in my back and as I was due back at St Mary’s he suggested I ask them if they would x-ray my spine. He also noted that he had heard from my local hospital (rather belatedly) that the smear I had there in April showed there had been a change in the cells and I needed treatment and was asked to attend the clinic at the beginning of October. My GP then phoned them to say the doctors at St Mary’s were handling my ‘management’.

I went for the colposcopy and once more the doctor had to lift my left onto the couch and I was surprised that alarm bells didn’t ring with her. The images from the colposcopy showed abnormalities, but a biopsy would be needed before the treatment could be decided upon. By now I had been going back and forth to St Mary’s for much of the year, but had only seen the professor at the first appointment. During subsequent visits I had seen his lesser mortals and it was to them I had been complaining about my leg, to no avail – and nothing showed up on the x-ray, but as far as I was concerned they had done the wrong area anyway.

I read several medical books and thought I must have some sort of osteoarthritis or osteoporosis or whatever. The books said you should take regular exercise. I was spending weekends with Paul, so we would go, as best as I could, for walks in the Lancashire and Yorkshire countryside – dragging my left leg behind me!

Paul had been estranged from his own grown-up children and I persuaded him to go and visit them at the Welsh cottage he had signed over to his first wife (for the children as an inheritance for them, no matter what happened in his life) at the time of their divorce, in addition to dividing the family home and effects. As his ex-wife would be at the cottage he wouldn’t go without me, so it seemed a very long journey in a very bouncy jeep. I was in such pain that I had to kneel up on the seat for much of the trip.

Paul was trying to divorce his second wife, but she was refusing to sign the papers – saying she wanted her settlement first. She kept moving the goalposts – first she would sign when the marital home went on the market, then when people came around to view, then when someone had decided to buy, then when the house was sold and the money was in her pocket and so on. It was a very distressing time for him and we started trying to gather proof that the court would need as evidence that she was living with someone – and also working for him in his business. Some of our exploits turned out to be hilarious, but too long-winded to write about here, so I shall keep those for the book!

Finally I had to admit I had a serious problem, so phoned Christies and asked if I could have an appointment back there. Mr Schofield’s secretary asked if I was still attended St Mary’s and when I confirmed I was, she said I was to wait until I had finished that treatment, as they didn’t like patients visiting two hospitals at the same time. That avenue was closed.

It was 1989 and Paul had taken early retirement from his full-time teaching post at Liverpool, but had the opportunity to work there part-time for two days a week. I was still living with my parents, spending as much time as possible with Paul at the weekends.

After the aborted cone biopsy in May at my local hospital (they were also meant to remove a cyst but ‘didn’t have time’) I had started experiencing a heavy ache in my lower abdomen and I reported this to Dr James at one of my regular check-ups at Christies. Over the phone he discussed my case with the professor of gynaecology at St Mary’s Hospital, Manchester, but he didn’t want to take my case because of medical ethics – and especially as he knew the consultant who had attempted to do the earlier cone biopsy, so it was just left that I continued with the regular smears at my local hospital.

That year brought the demise of the new business my ex-husband had started and so one weekend our elder son who had been working for him, made 19 job applications. As is so often the case hardly anyone replied, but one application was successful – and that took him off to the Far East and he bought me an airline ticket to go and visit him early the following year. My younger son graduated and started work that involved short contracts in the Nigerian swamps and later the Libyan Desert.

I was finding life hectic and even more so with taking time off to go and visit my son. My friend Carol at college had discovered a lump in her breast and fell apart, refusing to tell most other friends and relying mainly on me for support. It was very stressful and after she had her mastectomy she wanted me to look after her, spending some nights and weekends with her and occasionally looking after her young daughter. There was so much to do and I felt I was going under. Fortunately my younger son was between contracts and helped me as much as he could and so did Paul.

1990 and off to Hong Kong I went – and Dorothea came too! It was a 12-hour flight and my son met us at the airport. He announced he was playing rugby that afternoon and we were to go and watch him! It was winter and we sat on the cold concrete steps trying to keep our eyes open. It seemed like a very long game! That evening there was a fancy dress party and ‘would we like to go?’ Dot and I are both party animals, but we resisted the temptation in favour of what we hoped would be two nice warm beds. Alas there is no central heating in Hong Kong so the room was far from warm and I had to irrigate in a freezing cold bathroom!

One of the Ladder Streets, Hong Kong

What an extraordinary time we had – walking around Hong Kong and taking buses, trams, trains and ferries, visiting all the tourist spots. We climbed up every flight of steps (or so it seemed – and they are everywhere), saw most of the temples, visited friends near the mainland border, went to Macau (even travelled in a rickshaw at one point) – and Dorothea shopped at every market! I was exhausted! That ache in my abdomen had been getting worse and whilst on holiday I became stress incontinent. Alarm bells were ringing but I said little.

A means of transport we didn’t try!

Bamboo scaffolding

The Ruins of St Paul’s, Macau

Paper funeral furniture

the border post near Fanling

In April I had a check-up and smear as usual at my local hospital and reported the latest developments to the doctor. He said he would discuss the situation with my consultant and he may want to see me himself. It might be that the uterus was pressing on the bladder and I might need a hysterectomy, in which case I would be placed on the waiting list and it could be six months before admission.

Just a few days later during another check-up at Christies, I told Mr Schofield the story and he was not happy that I might have to wait so long if a hysterectomy proved necessary (he actually said he wished he had done that procedure at the same time as the AP resection). He phoned the professor of gynaecology at St Mary’s (the same person Dr James had spoken to) and arranged for me to see him the following day.

The prof was probably in his 60s, extraordinarily attractive and very likeable! He studied the notes from Christies and asked me about my symptoms. He paused for awhile and then said, ‘after all you have been through, my dear, is it not possible this is all in the mind?’ For a moment I was speechless, but after taking a deep breath and gathering myself together I said it might seem a possibility, but I most definitely was not imagining it! He examined me and did a cervical smear. He thought the incontinence was perhaps due to bladder problems and not the uterus, so he arranged for me to attend the Uro-dynamic Clinic the next day.

I had a cystoscopy and yet another undignified procedure that turned out to be – my bladder filled with water and then I was told to cough and jump up and down to see what happened. Yes, I was suffering from stress incontinence! The report would go to the professor and he would act accordingly.

I was admitted to St Mary’s at the end of June for my bladder repair and to have the cyst removed. Irrigation is always a problem in communal loos, but in St Mary’s it was awful. They only had a few toilets situated internally along one side of the ward, with little ventilation and the doors opening right onto the ward. Not only a problem for me, but also for the other patients who might have to wait an hour and a half for me to vacate a loo – and then not the most pleasant atmosphere to enter! Suddenly I was moved to a private room around the corner – with en-suite facilities. I never thought there would be advantages to having a colostomy!

A few weeks after my interview I heard that I had been accepted onto the BA (hons) Graphic Design course at Liverpool Poly. I was ecstatic and applied for a grant. It was refused on account of me not being resident in the country for the previous three years. Downhearted I attended an open day at the college and there once again I saw Mr Tall and Lanky – now known as Paul – and told him his efforts had been in vain as my grant application had been refused. Once more I heard him snort – ‘see your solicitor – write to your MP – don’t give up!’ I did just that and got my grant.

A friend’s renovation project in Folkestone

The summer was spent with friends and family, sketching and doing the pre-course work we had been given. I spent several weeks house-sitting for friends (Marion and Juan, in whose house I’d had a studio in Zambia before they moved back to the UK) in Folkestone, where they had also invited my parents to stay awhile. My sons came to visit too on separate occasions and with each of them I took a day trip to Boulogne. There were a few old friends in the area and I also made new ones, not least Mad Matt, an Aussie who was doing the usual back packing stuff in the UK. I was free for the first time since I was 14 and I was reliving my lost teenage years by running riot. I had such a good time in spite of my colostomy and the cancer seemed a million miles away. (Marion actually said that she thought the recurrence of my cancer had been a positive thing as it prompted me to walk away from an oppressive marriage!)

With Mum and Dad in Folkestone

Faces at a Folkestone Dinner Party

Come the autumn it was back to reality and down to work. I took the course very seriously and found it quite hard, especial the art history and the thought of writing essays filled me with dread (I’d even failed my O Level English!) Field trips were a problem too – youth hostels or cheap hotels with no en-suite bathrooms are not conducive to easy living for ostomates, but I coped. Another big problem was the wind. Farting is a wonderful way to ruin a lecture! I developed coping strategies like coughing or knocking my books to the floor. I’m naturally dyspraxic so that came in quite handy as a cover.

In May of 1989 (during my first academic year) I attended a Well Woman Clinic and they discovered I had carcinoma in situ of the cervix and so I went into my local hospital to have a cone biopsy and a labial cyst removed. I came around from the anaesthetic only to discover they had been unable to perform the operation as the uterus had slipped into the cavity where my colon once was. It was decided just to monitor the cells with six-monthly smears. The cyst wasn’t removed as they ran out of time!

There were other mature students in my year and I became particularly friendly with Carol, a few years younger who had lived in South Africa, so we had that magnificent continent in common as well as our art and marital status. We sat back to back in our little workspaces and over that first year, Paul, who was one of our tutors on Mondays, would frequently come and chat to us. I discovered he drove through my hometown every day on his way to and from work and he offered to give me a lift. I do not believe he had any ulterior motive, but I declined, preferring to drive my old banger to my nearest station and taking the train to and from Liverpool.

Before long it became apparent that all was not well in Paul’s household, culminating in his wife leaving him and moving into a house she had been renovating (with her business partner) less than 100 yards from the marital home – with her boyfriend! By now I had learned this was Paul’s second marriage and only three of the six children were his, the other three were step-children – all grown up and away from home, except his wife’s middle child – a daughter aged 23 and her mother left her in the marital home with Paul! He was devastated by his wife’s infidelity, being terribly naïve and having no idea that this had been brewing. One evening he invited me out for a drink and I was snowed under with college work – and had been determined never to get involved with another man, so declined. He said, ‘I though you were my friend!’ I went for the drink – and as they say, ‘the rest is history!’

Telling Paul about my colostomy had been a major issue, but he was fine about it and as it turned out he had issues of his own which we worked our way around and discovered a whole new life with each other. I couldn’t believe my luck at finding such a man, though he was about to go through another acrimonious divorce and as before, his property and life savings were to be decimated, the apparent injustice of it all leading him into bouts of depression and mood swings.

My colostomy was causing me all sorts of problems; never settling down to a regular pattern and I was constantly worried about the wind, especially during lectures, so the stoma nurses at Christies suggested I try colonic irrigation, which is an enema into the stoma and after the bowel has evacuated you can use just a stoma cap instead of a colostomy pouch or plug. I would have still been quite happy with the plugs, but wind was constantly blowing them out, so with the okay from my surgeon I decided to give irrigation a whirl. He had lived in America for 20 years and said it was the preferred method there for various reasons – and if he had a colostomy it would be the method he would choose. That was good enough for me!

An appointment was made for the stoma nurses to give me a trial run of colonic irrigation. What they didn’t tell me it was the first time for them too! How did I discover this? Well, on the ward at Christies they led me into the bathroom – which, although it is very big and ideal for giving someone a bath and had all the lifting equipment – it doesn’t actually have a toilet in it! Looking at each other they even suggested using a bucket until the practicality actually dawned on them. They are two of the nicest people and I really did feel quite sorry for the dilemma they were in. The only answer was to do it in the communal loo next door, so they filled up the irrigation bag with water from one of the sinks and we all squeezed ourselves into a cubicle, together with a drip stand to hold the water bag. I started to take my panties down, but they said that wouldn’t be necessary as all the faeces are evacuated from the stoma via a long plastic bag into the toilet bowl. Well, that’s the theory!

The pain was excruciating and the amount of excrement unbelievable. We were all shocked and I began to feel faint. To put it bluntly there was shit everywhere and my panties had to be washed. I thought I had gone pale, but they described me as going green! When finally things appeared to have calmed down they applied a colostomy pouch, as they were unsure if a cap would be suitable in light of their immediate experience. I was completely drained – quite literally, so they took me to a bed on the ward and went and brought me some disposable knickers. Then they found Paul and brought us cups of tea. I think it took me a couple of hours to recover and although they gave me the equipment to take home, it had been such a disaster that they didn’t think I would ever try it again. They were wrong and although I do still have problems sometimes – another fine mess has quite a literal meaning, but for me it is still the best method by far, unfortunately it isn’t suitable for everyone.

The First Irrigation

After the aborted cone biopsy I had started experiencing a heavy ache in my lower abdomen and I reported this to the registrar when I next attended my local hospital for a smear. He said he would discuss it with my consultant and he may want to see me himself. It might be that the uterus was pressing on the bladder and I may need a hysterectomy, in which case I would be placed on the waiting list and it might be six months before admission….